Welcome! Lenkaland shares my adventures in creative photography, raising two kids, writing, living with chronic illness, raising a daughter with dyslexia, and swimming with mermaids. Hope you have a nice stay!

Living with CMT, Day 14,673

I would enjoy a hundred-year nap. Today wanted to snap out of the funk. I wanted to be myself again. I don't write about this gloom often. This is the only month when I give myself permission to gripe a little. Usually I write on happier days. Usually I spin a positive story. This month, this month I get real. I think this foot is taking a lot more energy than I predicted. It's robbing the light from the sky. I cannot feel rested enough. I feel like I had a bad cold yesterday, like I helped a friend move up two flights of stairs, like I am made of cement instead of starlight.

Not fun.

Luckily Ian and Anika had school so I gave myself a lot of downtime. I sewed little gnomes with witch hats. Knitted a little bit. All very calming. I am good at inspiring myself on days like this. I find projects and movies to distract me from the malaise. That's my best word for it, malaise.

In the evening, though, I rallied for Back to School Night. This is when CMT feels like a quiet, isolating challenge. Because I get the adrenalin pumping and I was standing up for ages and planning trips and sharing the collective energy of a new school year. No one would have guessed that the rest of my day felt like swamp-muck. Now my ankle hurts like crazy but I distract myself with writing this post :).


A photo of my boot. Big and heavy. Puts pressure on my sore ankle. Not my favorite accessory. But at least I can take it off! You can see my other foot in this picture, too, with my lovely Barbie Doll arch :).

For the past three or four years, I talk about CMT at Back to School. I save myself the many small conversations that way, when people are curious about why I ask them to help me open a child's Thermos, or why I sit on tables on the recess yard. I introduce myself first. I teach a kindergarten/first grade combination class two days a week. I share how I got a Teacher who Makes a Difference and Teacher of the Year awards. Then I share how I am a model for a compassionate community because they get to take care of me, too. I say I have nerve damage, which causes muscle weakness. It's a genetic disease. I am very capable in the classroom. I have fun days with a few modifications. I tell them I have Charcot Marie Tooth, named after the doctors who discovered it. CMT affects 1 in 2500 people and they could know other people with it whose symptoms are not obvious.

Sharing the story, one discussion at a time :). And I get great responses when I share my truth. I even met a good friend with CMT this way! I tell them I lean against things or sit on the edge of tables. I find that when I am accepting and up-front about CMT, people are happy to accommodate. They may have their own stories of invisible illness. We are strong together.

This year is a particular challenge with this awful injury. It's really dragging me down. Everything takes extra effort. And the constantly swollen ankle is draining me. Then there is the pain medicine to make healing bearable. Not any drastic medicines, but, still.... I am sure my system would rather not have the medicines. Oh, well.

Time. Patience. Rest. These challenges feel insurmountable on days like today. But I can heal this. I may be broken, but I still have amazing powers to fix myself. I like to think that on the same team as my poor damaged system. How can I help make things better? As opposed to, how can I battle through or overcome this?

Rest. Time. Patience. I have been very lucky avoiding injuries the past few years. And I am very lucky to be in a community that values my gifts. I get to teach tomorrow. So I better rest.

More fun tomorrow! Wishing you laughter today!

20120905-220340.jpg Signing off with Tiger, because he doesn't care that I have CMT either :). Life beyond labels :)

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